A lot has been said about the high costs of chronic diseases, especially things like rheumatoid arthritis where biologic medications can cost thousands of dollars each month. When costs are mentioned, it usually refers to the actual money spent by patients and insurers for medical treatments. It occasionally refers to the revenue impact caused by missed time at work, early retirement due to health reasons, or loss of income due to disability.
The money is, obviously, very important and it’s fairly easy to quantify. But to me, one of the true costs of having a chronic disease is the TIME it takes out of your life. In addition to the time it takes to see the doctor, there is also the time you spend not feeling well and missing out on life as well as just frigging managing everything.
When I left the workforce last November to concentrate on improving my health, I didn’t realize that I was trading one career for another. Here’s a look at my next few days:
- Today (Thursday) I had to get my every-four-weeks labs done since we’re carefully monitoring liver enzymes due to the high doses of medication that I’m on.
- This was followed by an hour of physical therapy to hopefully improve the contracture of my calf tendons and avoid a painful surgery with a long recovery.
- Tomorrow (Friday) I have my every-six-month check up with my cardiologist. I do this every six months instead of annually because people with RA are at a higher risk of cardiovascular disease than those who don’t have it.
- Saturday I pick up hundreds of dollars worth of prescriptions at the pharmacy for myself and my husband so I can fill up our pill minders over the weekend.
- Sunday I take my weekly methotrexate injection.
- Monday I have my monthly Actemra infusion and take most of the rest of the day to recover from the headache.
- Next Tuesday and Thursday I have physical therapy (again).
- Every day for the next six weeks I have to do my physical therapy “homework” twice each day.
That’s six appointments out of the house in about eight days, plus managing my medications and doing my physical therapy homework.
In between all of this, I have ongoing, continuing, mind-numbing battles trying to push insurance and disability claims forward through the system.
And my husband asks what I did all day while he was at work. Sheesh.
I hope the time you spend today is done pleasantly and with people you love. Thanks for checking in.